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Friday, September 30, 2011

Before leaving DC to attend Health 2.0 in San Francisco, I finished painting Janice McCallum’s jacket. Though a series of emails I learned that she quite admired @cyberslate’s jacket with its Wonder Woman motif, and was saddened that she could not have that avatar upon her back. As our correspondence continued, I learned more about Janice. I learned that her father had brain surgery when she was only a babe of six months. I learned that Janice has always been interested in medicine since she was a small child, but as a girl growing up in the sixties well meaning adults thought that meant her interest would lead her into nursing.

Janice stayed interested in medicine and this led her into the world data aggregation. She realized early on that the electronic medical record is the patient story. She lives within the many worlds of social media following multiple conversations. She discusses trends and controversies within health policy, pharma, provider and patient communities. She told me all of these things, and I painted her thus.

The Armor We Wear: Janice McCallum’s jacket.

Do you remember Underoos? The product was developed in 1977 and the concept was simple. Underneath their regular cloths little boys and girls could have underwear that was designed to look like a super hero costume. In 1980 many girls and boys proudly wore underwear that acclaimed look at me, “I am Wonder Woman or I am Superman!” And they often wore it at home without the protective outer layer of clothes of Diana or Clark Kent. The commercials even seemed to normalize such behavior.

I took one look at it and knew it was dangerous. I was only eight years in 1980 but I knew it was not safe to walk around in underwear. We were safer in street clothes.

That was the armor we wear.

But in this painting I depict a young Janice dressed only in Underoos standing by a fountain. You see Janice speaks openly in the transparent and eternal world of social media and the armor she wears is her bravery and honesty. She stands up for patients while wearing her “unmentionables.” She is washing her hands within the painting in an over-flowing fountain. Here liquid data spills in an ever-flowing stream of twitter updates and conference posts.

Behind Janice a Pan-Am stewardess holds out a tray with a brain upon it. This represents both her father’s procedure and her own decision to develop her brain over her brawn.

To Janice’s left a nurse stands, offering her another life path as a caregiver. The nurse looks with a troubled countenance into the distance. Perhaps she would have chosen another direction: a life as a doctor or data technician if she had been born in a later time. Nursing is a grand and noble profession, but it is a calling and it is not for everyone.

All three figures have feet chopped off within the frame; this represents the hobbling that still exists within many professions for the female employee. All three have faces that show concern and worry.

But they are brave, and each walks forward into life helping others, costumed by the armor they wear.

They make me think of connections: the connections that link letters into words and the connections that link strangers into chains of friends. When I was in fourth grade, I learned to read and I learned about the power of friendship pins.

Before that year, words were such a disjointed and confusing puzzle. I would sound out words laboriously within the lowest reading group. I would wince with frustration as I heard my halting sentences, while across the room the "gold reading group" raced through the hardest passages with ease.

Then I met my fourth grade teacher Mrs. Graham.

She was so kind. She taught me the simplest lessons. She gave me 10 spelling words like cat while the rest of the class had 20 words like encyclopedia. She would praise any small accomplishment and put huge happy faces on my work. Under Mrs. Graham's tutelage I began to blossom as a scholar.

Whilst I was learning the correct way to spell and read, a playground trend was emerging. Friendship pins. Unlike the popular trend of wearing Guess jeans that would follow the friendship pin craze, this had a low threshold of entry. Even the poorest among us could afford a pack of safety pins and beads. Each of us began creating our own signature pin and began trading with others. You could easily tell the most popular students from the other students in school as they had the most "followers" or shall I say pins? I knew one girl who had a chain of over 100 unique pins that she wore wrapped around her body.

All of these thoughts ran through my mind as I pondered David Harlow’s Jacket. Do you know David? For the past two years I have known him as @healthblawg on Twitter. He always has such insightful things to say about medicine, law and Meaningful Use.

I especially like his wordles. This is one of David’s designs. It was based upon the proposed rule for Meaningful Use.

Do you like wordles? I do. I love the truth they show. I love the idea of taking a document, any document, and analyzing intent by word frequency and then displaying it in such a visual and colorful way.

When I saw David’s Wordle, I saw Friendship Pins.

In this painting, a strong hand is flexed open and stretched taunt between thumb and pinky finger is a friendship bracelet woven in the colors of the Rainbow Button Initiative. Dangling upon that woven line is a complex network of friendship pins. Each pin, big or small, is latched one upon the other forming a Wordle of Twitter hash tags.

The pins say things like #CMS, #ONC #HHS and #HCSM. These are tags taken directly out of David’s twitter feed. You see David is a connector bridging many worlds. He can comfortably expound upon law, medicine, social media and patient advocacy. At Health 2.0 this past week he did exactly that. While I painted during the Patient’s 2.0 session on the 25th in San Francisco, David attended the Law session as a Walking member of The Walking Gallery.

David did what David does best. He made connections, both within his mind and between the attendees assembled.

He did that with a painting on his back in session filled with those who analyze the law. He represented us patients by wearing a painting of pins in a wordle writ large and Meaningful.

When I think of David, I think of the web of friendship we are building and the wonder of being able to read, for that is what he does for us. He decodes the arcane and presents in an easy to understand format. As he teaches us to “read” he connects us one to other and we are so very blessed.

Saturday, September 24, 2011

On Tuesday I had the opportunity to speak at AHRQ for the first time. Their annual conference was held once again in The Marriott conference center near the White Flint Metro Station in Rockville. I realized I had been there once before. This was not the confused deja vi of a weary conference traveler, I seen Ted Eytan speak here a year before.

The Marriott had a sort of creepy sleepy stillness about it. It did not help in the least that I had just watched the most recent episode of Doctor Who: The God Complex. That episode was set in a hotel decorated with the same type of eighties opulence as this Marriott. Within that episode, each room contained a personal horror designed to break the faith of each unexpected guest.

In this hotel, attendees walked by leisurely as they chose which presentation to attend from the multitude of those offered. They opened doors, they walked within and disappeared. I paused, glancing at the different signs looking for my room. Whilst wondering if little Miss A should enter track B, Jon White found me. Jon works for AHRQ and had invited me to take part in his panel. Cell phone in hand, he gestured his awareness that I was present and then rushed away. His team member Heather soon appeared and began guiding me to the presentation room.

En route we ran into Ben Miller, also known on twitter as @Miller7. It was so exciting to meet such a great social media voice in real life. His physical person is as slight and lively as his twitter voice. I offered to paint his jacket immediately, but as it was a full matching suit with vest he declined in favor of continued marital accord.

I really enjoyed presenting with my panel. We had a nice size crowd in a small room. Though we presented at 3:30 in the afternoon, I did not see the tale-tell head jerk of the the seated sleeper. Ron D Hays and Keith McInnes had such amazing information to present about CAHPS questions relating to HIT questions. It was an honor to follow their thoughtful presentations. As the session ended, Ben asked me to come back the next day to attend the 3.5 hour town hall on mental health.

I said I would attend, and I would paint.

After bundling both of my children off to school, I lumbered, French box easel in hand, back to the Marriott. I had been assured that there would be space for me even if it were standing room only. I quietly let myself into a room as large as a grand hall. 300 seats were arranged before a the stage. A selection of speakers including Dave DeBronkart sat upon the dais A film crew was filming every moment as the event was being live-streamed.

There were only 49 attendees seated in the audience.

I was dismayed. As set up my easel dismay turned to anger. I felt as though I should check my vision and compare my expectations. I quietly removed myself and peeked into the next great hall. Here the room was full. I walked away and reentered our room. The empty one, the room whose empty chairs gaped like the holes within a lotus pod. Furiously I began to paint.

This is Katerina's Jacket: The Stream.

I can assure you that if Katerina Jackson-Suchkova had been in charge of that session every seat would have been filled. Katerina works for Lifetime Health Diary. It is a PHR company that contains and aggregates years of personal health data and uses a personal visual health construct on each users landing page. I love it, it actually has a picture of health.

I got to know Katerina when she organized a round table on health in DC. She was brilliant and had such an organized mind. She put together an excellent panel that day.

But this was another day, at other panel and I was painting eyes. The back of Katerina's jacket is littered with eyes. They fold blue within blue, the swirling tones of facebook and twitter look upon the viewer; for this is the stream. These are eyes of the countless viewers who watch the stage while far away in some other room.

Below a sky of eyes, the green grass is a horizontal capsule. How can we talk of mental health without bringing up the subject of drugs? Sprouting from the capsule are four silos. Each silo contains a figure garbed in a short and straining patient gown, trying desperately to escape.

In the center stands the epitome of fright: the Scream figure by Edvard Munch. He yells at the viewer while wearing vestments arrayed upon his gown of black. The vestments are embroidered with scientific symbol for male and female. He is speaking to all of us while he preaches to the choir.

Below the frightened figure, the choir raises their hands in concerned praise. They agree whole heartedly that we need to have more transparency in mental health between patients, providers and communities. But the choir is so very small.

Finally the saddest part, the part that makes this Katerina's jacket. A doctor on the dais recounted a tale of a young lady who took her own life. "She seemed so happy" he said. But then they read her diary. They read her words of all consuming anguish stemming from her infertility.

If only they could have read her diary before it was to late.

Do you see the life-saving beauty of an online health diary? As a widow who has data-mined a year of her own late husband's Facebook status lines, I can attest that the words we write are powerful things. They are powerful for the individual and for the aggregate. They show us patterns and mark the tide of years.

Can you imagine a different ending for the lovely lady with such a diary? Can you see her enter another room that does not end in broken faith?

Tuesday, September 20, 2011

I was in first grade in Oklahoma in 1978. I had the most beautiful teacher named Mrs. Buckley. She had long shiny black hair and wore red lipstick. She would sit in her teacher’s chair as we gathered around on the carpet in a room filled with sunlight from windows overlooking the playground. She would open a very big book with the most colorful and happy pictures. She was teaching us how to read and the book she was using had three characters: “Sally, Dick and Jane.” I never really caught on to the reading part, but I loved the pictures and I can pretty confidently state that those images have affected my art ever since.

I was in the last first grade class to try to learn to read using Sally, Dick and Jane. This system of sight word reading had been in use since the 1930’s but was in massive decline in popularity by the 1970’s. I vividly remember my one-year of instruction in the method, but I still did not learn how to read.

I failed first grade.

The next year my teacher was named Ms. Harmon. She had short brown hair and suffered from a boil on her neck. She tried to teach us how to read in an over-flow classroom in the basement of the school next to the boiler-room. It was very dark in the room and our windows showed a view of the asphalt on the surface of the playground. She was teaching us using the P-H-O-N-I-C-S method. She used books illustrated with the abstract flat art styling’s of the 1970’s. I found the instruction in two different methods in as many years terribly confusing.

I still did not learn to read. In second grade they put me in a learning disabled group, back when that was a very bad place to be. So, mostly I spent my time drawing. I tried to create story pictures as beautiful as my memories of Sally, Dick and Jane.

All of these memories came to me as I thought about the jacket design of Jane Sarasohn-Kahn for her place in The Walking Gallery. This is her jacket: “See Jane Think.”

Do you know Jane? She tweets as @HealthyThinker on Twitter and blogs at Think Heath and Health Populi Blog. She is an amazing patient advocate and I have been honored to see her in action moderating panels, micro-blogging and speaking in the past year. Often she is doing all three at the same time. She is a powerful connector with an amazing network. And though she often cuts through idle chatter in HIT circles like a hot knife cuts through butter, she does it with a sense of grace and dignity that leaves her with friends and supporters rather than enemies and detractors.

So within her painting, I paint Jane in the center wearing her signature black clothes. She is Jane the child in this image and she will teach you how to read… data sets and patient stories. She has her I-pad before her and she points to the phrase “Let Patients Speak.” Plugged into her I-pad are two sets of ear buds and two practitioners are listening with a gentle countenance to the recording on Jane’s device.

Beside Jane, stands Sally wearing a red dress. She holds a smart phone and is ready to use mobile health to improve care outcomes. She stares at the patient in the foreground. Here stands Dick. He is both and old man and a child within the piece. He holds out a paper asking, “Where is my advance directive.” This patient represents Jane’s own father who lived hours longer than was his wish. You see Jane’s father had signed an Advance Directive specifying no intubation, but the Doctor on duty could not find that piece of paper. So Jane’s Father suffered needlessly, as did the family, from the want of an accessible medical record.

I bet Jane’s Father learned to read using Sally, Dick and Jane. Perhaps he was one of the first classes while I was in one of the last. But in all the decades between we are connected by stories. When Jane wears this jacket I am sure she will continue a grand tradition of creating higher literacy levels while using clear phrases and simple words supported by crisp illustration.

She is helping us tell a story, and I know at Health 2.0 I will be overjoyed to see Jane think. Not long after finishing this jacket I received an email from Deb Linton at Health 2.0. It was presented as concisely as any Sally, Dick and Jane book. I hope to see you there...

Register for San Francisco's Patients 2.0 this weekend

-It's FREE
-It's one of the biggest patient events of the year
-I'm planning it
-It's moderated by Jane Sarasohn-Kahn of THINK-Health and Health Populi blog

Saturday, September 17, 2011

I have been blessed in this life to be loved by a multitude of mothers. I have a mother that bore me who is sweet and kind. Her hair is soft and falls in silver ringlets on her head. She walks upon legs tired and worn by years of labor. She smiles with the most amazing slightly crooked smile, and her eyes may be brown, but they sparkle.

I have a mother- in-law named Joan, who cherishes me and my sons all the more, for the son she has lost. She too lumbers painfully upon legs so tired from years of labor. But despite the pain she visits monthly, often watching the boys while I travel to speak.

I would be lucky indeed if these two precious women were my only mothers, but I also have Aunt Minnie. Aunt Minnie is the widowed older sister of my mother. She is jolly and fun and was an ICU nurse for many years. She is the connecting point of my very large family, spending countless hours on the phone with the hundred-plus members of the family. In our youth, my sister Esther and I spent six years of summer days with Aunt Minnie.

But the nights were spent with another Mother: Aunt Hilda. Aunt Hilda and Aunt Minnie lived across the street from each other for as long as I can remember. Aunt Hilda was the spinster Aunt, having never married she dedicated her life to God and her work at Gold Spot Dairy. She was the stern one, the mother who did not let things pass. She corrected behaviors frequently and therefore any praise that came from her lips was doubly sweet. She smiled the most beautiful smile and her laugh would echo around a room filling it with joy.

And today as ride in a train to New York to paint about disease in Central Park, I get the call.

Aunt Hilda died.

It wasn't too unexpected as Aunt Hilda has been suffering from advanced Alzheimer's Disease for the past few years. It has been years since she has spoken more than the occasional word. But that is not how I remember her. I remember her sitting at night reading her Portals of Prayers and Bible readings. I see her in my mind mowing her lawn or making one of the desserts she was famous for. I can see her working at the dairy, testing milk and creating cultures. Working in a job for forty years with only a secondary education, and showing me that education was important, but so was perseverance and dedication.

For these past few years, Aunt Hilda has lived in assisted living and finally a nursing home. Everyday without fail Aunt Minnie would have lunch with Aunt Hilda. Early on in the progression of the disease Aunt Minnie and Hilda would talk. But as the disease ravaged Aunt Hilda's mind, she stopped talking. She still remembered how to chew and swallow, so everyday Minnie would go feed her lunch. Aunt Minnie kept this vigil year after year, she would come back praising Hilda. Aunt Hilda never fell into sadness or anger, instead every day as Minnie fed her she would smile.

She smiled the most beautiful smile.

Today, I miss my other Mother. But the greatest tears I cry for My Aunt Minnie, for tonight I know her her heart aches as she misses her best friend.

Tuesday, September 13, 2011

Before my late husband Fred died from kidney cancer in 2009, I rarely flew. Perhaps we would fly to Oklahoma to see my family or I would fly to Chicago to attend an art supply trade show. Maybe once a year I flew, if that. In 2011, I have flown every month and sometimes several times a month. I stand in que and wait thru numerous flight delays, in order to represent the patient and caregiver view through story and art.

Today, My flight was delayed so I used my ample free time to stand in line at Starbucks. Beside my place in line was a promotional banner for a seasonal Starbuck's drink.

Pumpkin spice latte is back.

My eyesight rippled as though I was viewing the world through old glass. The sheen upon on my eyes condensed and formed tears that rolled down my cheeks.

I was standing in the middle of Chicago O'Hare airport in line at Starbuck's crying because of Pumpkin Spice Latte. No, that is not exactly right. I was crying because because the man I loved, gone these past two years, would have been so frantically happy that Pumpkin Spice Latte was back. He would have said, "Look, Reggie Look. It's back!" He would have rubbed his hands together in excitement and his eyes would have sparkled. And we would have bought the drink and giggled.

But he is dead and grief just smacked me 'side the head as I stood numbly staring at point of purchase sign. I don't know how many times the barista must have said "Miss?" before I finally answered. I guess it was quite a few times by the hand covered giggles and the knowing eye rolls the barista shared with her fellow employee. I ran my hands across my cheeks and ordered a plain latte. I wasn't embarrassed to cry.

After all, everyone cries at airports and on airplanes.

Of course there is the expected tears during homecoming embraces at baggage claim and the grief of farewell at the security gate. But tears at the airport are far more invasive than that. Many times I have been seated in row 27 b with the woman on left crying into her novel and the man on my right surreptitiously wiping away the tell-a-tale moisture while watching the inflight movie.

Recently, I even heard a story that one airline will now warn their passengers that the inflight movie will be tear inducing, to allow some folks to forgo the emotional experience in such close quarters. I heard a l lot of comedians make jokes about such warnings, but I applaud the airline. Forewarned is forearmed.

Have you heard of the concept of terminal restlessness? When I first heard of it I thought of air travel and the endless pacing and waiting by the gate before embarking on the journey, but it has another meaning.

When Fred was in his third week of hospitalization, we were well and truly into the realm of what often seemed pointless waiting. This was the week that the mad rush of guests slowed and time weighed heavily upon us. On one such day of waiting, I began to talk to Fred about Steven Spielberg's movie: The Terminal.

I sat at the foot of his bed and said, "Fred, I have been thinking about the movie The Terminal, and I don't think it is just about airports."

He looked over to me at the foot of the bed, his too thin arms crossed upon his chest and managed to look professorial in a hospital gown. With his blue eyes dulled by morphine and pain he said, "Hmmm?"

"Well," I said, "I think Tom Hank's character has a terminal disease and he is stuck between worlds. He can't go back to his native land of the healthy and he won't step out of the terminal to embrace a new and frightening place that he feels he does not belong in. So, he just waits...in the terminal. He can work in repetitive tasks, he can even grasp at love, but he is stuck waiting inside the terminal."

Fred no longer looked at me. He stared at the ceiling. His chin slightly upthrust and looking so very brave. He swallowed twice and I watched the muscles ripple across his unshaved throat. He coughed and clenched his jaws slightly before offering up a response, "It's a theory, I guess."

So, if I was ever asked what was the definition of terminal restlessness, I would have told you it was an apt description of a film staring Tom Hanks. But I belong to the kidney cancer widows group on ACOR, so I learned the true meaning in a recent post by a fellow widow. A little more than two years ago I can confidently say my Fred suffered terminal restlessness, but at the time I thought my Fred was just being my Fred.

You see sometimes before a person dies they go from being very docile and sleepy, to somewhat frantic and upset. They will try to get out of bed and walk around even if they have been mostly bedridden. They may yell or act as though there is something they must do, something they have forgotten. My widowed friend explained all of this within her email to the group, though her explanation was cloaked with her regret of being unable to handle such behavior even though she had been caring for her husband throughout his long illness.

As I read her explanation, I thought of two things. I thought of the term "nesting" as it applies to a pregnant mother. I remember vividly my nesting phase before the birth of both of our sons. I did so much on those days, feeling there were so many tasks I must do right away. I was pacing and doing until the point the contractions set in.

And I thought of the night Fred died... and I realized that night Fred was suffering terminal restlessness. But unlike my widowed friend our experience was not one of sorrow, but instead one of comfort. You see I fell in love with a man who paced, who frantically gestured, who liked to talk through the night about everything under the sun and kidney cancer stole that man from me. Damn cancer for what it did to cause such a shining and exciting soul to close like a flower in the night. Damn cancer for taking the sparkle from eyes that used to gleam at the thought of pumpkin spice lattes.

But thank you to terminal restlessness, for one night I had him back. For one night he was excited again. For one night he was frantic and anxious and exactly the man I married. So what if everything he said that night didn't always make sense? He said it with passion. He held my hand with love and we talked until dawn.

And then four hours later he died.

So, now I know the clinical meaning of terminal restlessness. But think I shall call it terminal nesting instead. Because I think it is merely the final moments of waiting, the anxious preparation before we take flight.

Sunday, September 11, 2011

When I was a senior in high school a very important album was released. It was called No Fences and was performed by Garth Brooks. It was chocked full of songs that are now considered country classics. One of the most powerful songs on that album was entitled “Victim of the Game.” It struck quite a chord with me and other young girls. This song was so easy to identify with, as many of us were suffering the heartbreak of first loves and dating. We were realizing that for many people love was just a game. Here is the first stanza:

“Well, it took a little time

But I guess you finally learned

That promises get broken

And bridges do get burned

You've been siftin' through the ashes

Just tryin' to find a flame

Holdin' on to nothin'

You're a victim of the game.”

Recently, I found myself thinking once again of that song from so many years ago.

I began thinking about it as I began to design The Walking Gallery Jacket of Kathi Apostolidis: “The Victim of the Game.”

If you follow e-patient comments on Twitter, Facebook or e-patients.net you probably know Kathi. I have been following her since June of 2010. She is very active on social media, showing up throughout my day. Which is quite a feat as Kathi tweets from Greece. Her astute comments are always a strong addition to whichever discussion is at hand. Recently she asked to join The Walling Gallery as our first member from Greece. I was overjoyed.

I read a few of her recent posts and decided to depict her currents concepts and concerns. On her jacket we see two figures in a darkened room. The only light comes from a classic stained glass poker light. You might notice that the colors of the stained glass represent the colors of the Rainbow button initiative. Blue is for the blue button, currently in place at the Veteran’s Administration allowing veterans easy access to their electronic medical record. Green represents a desire to share medical information. Red represents the ability make information private. White utilizes secure email such as the direct project and allows patients to direct information where the wish to send it. And these four colors make the light in this room.

Two people sit at the table playing poker. To the left of the frame a female patient looks down despondently. She has folded. Two hands of cards lay on the table. It appears as if the female patient has twice lost while playing a straight flush of hearts. If you add both hands together you will see ace through ten. This represents the ten minutes the average patient has to spend with a doctor. An hourglass to the figure’s left that has too few grains of sand within and reinforces the frustration felt due to time constraints of a clinical visit. The female figure is too thin and appears tired. She looks longingly at the winning “chips” held by the other player.

The other player is male. He appears to be a corporate figure in a dress shirt and tie. He has won the hand playing a royal straight flush of spades. Here we call a “spade a spade.” This is an ancient expression from Greece, once used pejoratively, now it has come to represent transparent communication. His face is concerned and distressed as he pulls the winner’s pot into his arms. But these chips are not the ones used in any other game. Lids and jars of prescription drugs are scattered on the tabletop. The vital medicines pool before our corporate player as he gathers them up with a bewildered glance.

This was not supposed to happen.

This is Europe, where universal health care has often been the norm. Greece is currently in a financial crises, and some companies are withholding vital prescriptions until the state pays past due invoices. The people of Greece, still reeling from the economic crises, now find a health crisis upon their doorstep.

Here is Kathi working so hard for so long to improve the health care of patients in Greece. She knows how to research her condition; she knows how to best use her ten minutes with the doctor. And even she struggles as greater economic forces come into play affecting the world of medicine. And that brings me back to the truths of the namesake song for this jacket.

Monday, September 5, 2011

When I attended e-Patient Connections last fall I met an amazing and diverse group of people. There were techies, patients, representatives of the pharmaceutical industry, doctors and even a comic book writer amongst the attendees and speakers. I painted the entire time I attended the conference and it was the first time I painted onsite. I must thank Kevin Kruse for his great suggestion that I paint. While I painted in conference attire, a very nice man introduced himself as Craig Lipset and he told me he worked for Pfizer. He added that Pfizer had an office in New York that showed art on a regular basis and he would inquire to see if they could show mine.

A few weeks after the conference, Craig contacted me online to inform me, alas, the Gallery was booked through 2012. And that is all I heard from Craig until the night he attended The Walking Gallery on June 7th. He was quite taken with the many wonderful jacket stories on display. He asked if I could paint him one as well. I was feeling quite joyful and tired that night and smiled at him, telling him of course I would paint a jacket for him.

A few weeks later he emailed me asking if the offer was still on the table, or had I offered to paint while infused with the good intentions of wine and exhaustion. Once again I told him, Yes, I will paint your jacket.

But which story should I tell?

Should I tell his patient story? Should I tell the world about his life as new father in 2006? He had a lovely baby and a very bad cough. Now, many new parents do not get enough sleep, but Craig coughed so much he could not lie down to sleep. After visiting a doctor and undergoing 9 months of tests: 2 chest CT’s, 2 PET scans, 2 Cardiac MRI’s, 3 pulmonary function tests and 3 holter monitors. Craig was diagnosed with pulmonary sarcoidosis. He now has 50% lung function and is fairly stable.

Sarcoidosis, that sent chills down my spine. I painted a Walking Gallery Jacket for Leroy Jones depicting his mother’s 20-year struggle fighting sarcoidosis and was aware of her eventual death from the disease. I knew Craig had quite a personal story to tell.

But, that is not the focus of this jacket. Instead of focusing on his personal story he decided to focus his jacket in engaging patients as participants. Craig’s work has been about enabling two-way sharing of data with patients for research. As Craig states, “We have historically treated the patients that participate in research as “subjects”- we look at them, assign them a random number, we remove any identifiers and we extract data from them to put into a data base.”

This is Craig Lipset’s Jacket: “Subjects.”

This painting is homage to another's work entitled “The Accolade.” Edmund Blair Leighton painted "The Accolade" in 1901. He was an English painter that specialized in the medieval genre and his painting has become synonymous with the process of being knighted. In Leighton's painting, a Queen with sword in hand bestows a knighthood upon a kneeling subject.

In “Subjects,” the relationship has changed from a depiction of ruler and subject to an exploration of care among equals. The Queen has dropped her sword to her side and her other hand rests on the shoulder of a patient as she looks at him at eye to eye. Other patients/subjects gather round and each appear to be offering a green button to the Queen.

This is the Green Button Download. This is the concept that I, the patient, can share whatever health information I want. It can be scrubbed or not. I share this with you to help others and aid in the aggregation of data. And all I ask of you, is that you do the same for me. I ask you to share the data and conclusions that you have reached. I ask that we come to the table as equal partners in patient care and I will share with you. I may be dying, I may be well, but let's crowd source this. Let's put this in the cloud, let's open up my data set and that of all my willing brothers. Let's code-a-thon tell dawn and make greater strides in hours than is often seen in years.

Do you see that dawn breaking through the stained glass within this picture? Do you see Craig, sacred and still, holding a pill where his heart resides? Here is the new tomorrow shining through the colors of the rainbow button initiative. Here the blue button combines and grows. It spawns green for sharing, red for selective privacy and white for directing your data. Where this light falls, health is revealed and shadows melt away.

We are no longer subjects. We are partners in care. Let patient’s help, that is all we ask.

Thursday, September 1, 2011

My husband Fred had a favorite story about John Ford, and Steven Spielberg told the tale. The story was an account of the day that Steven Spielberg met John Ford.

The story went something like this. Steven was really young and had been making a few super 8 movies and he had the opportunity to meet John Ford in his studio office. After waiting for about an hour, Mr. Ford came in and Steven Spielberg began to speak with him for a few moments. Mr. Ford said, “So, you want to be a picture maker.” John Ford then gestured at a series of pictures on the wall. He asked Steven to describe what he saw. Steven started to describe the Native Americans and objects within the picture. That was not what John Ford was looking for. “No, no, “ he said. “Where is the horizon?” Steven said that it was at the top of the frame. Mr. Ford asked Steven to describe the next picture. Again Steven began describing the Calvary and elements, and again Mr. Ford was frustrated. “No, no. Where is the horizon?” Steven looked and said, “It is at the very bottom of the painting.”

John Ford said “When you are able to distinguish the art of the horizon at the bottom of a frame or at the top, but not going right through the center of the frame, when you are able to appreciate why it is at the top and why it is at the bottom, you might be a pretty good picture maker. Now, get out of here.”

That is a great story and Fred would tell it to his college film students and I would tell it to my pre-k art students for years to come. I loved that story because it makes it very clear that the angle from which you view things has an effect on how you view things.

This idea was reinforced yesterday at Isaac’s follow-up doctor appointment at the new Kaiser Permanente building by Union Station. He was meeting with a Nutritionist and was sitting in the waiting room section for internal medicine. Within the space, a kiosk had been placed to go online free of charge. Isaac walked over. He was very excited to find an accessible computer, but was quite disappointed when he tried to use it. The angle of the screen was set and fixed at an upward facing position. Isaac tried to adjust it as he would at home on our Mac, but the screen would not budge. He walked away his shoulders slumped.

Isaac had just been placed at the bottom of the frame.

I thought of all these things in relation to the jacket I was creating for Andre Blackman. Andre can be found on twitter as @mindofandre . He writes and speaks about the power of new media, social media, health 2.0, public health, mobile health and disparities. He sees a new future where the old tools of public health 1.0 are discarded and the power of Health 2.0 embraced.

So, I painted a new vision for Andre, a lady Justice for our time. This is “SOCIAL media JUSTICE.”

In this painting, an African American woman stands proudly. In her right hand she holds the scales of justice and in her left a suckling babe. A halo of binary code encircles her head and she is wrapped round within a golden cloth. Twisting around and behind her is a segment of film depicting icons from health, our life and social media.

Look at how she hefts the scales. This is not a dainty Roman deity with her hand lightly holding a tool of measurement. No, this lady hefts the scales as a weightlifter would, for justice is heavy. She looks unflinchingly down upon us, as she is slightly elevated within the frame. She is real and powerful. She is far removed from the artificial beauty that is often slathered on the faces of young women in our world. She is our future and represents all the wonderful regular people/patients who are joining a worldwide conversation on health.

The babe in arms suckles in contentment in his mother’s embrace. He feels safe and secure, held by an arm that so often holds a sword in other depictions of justice. Why a babe and not a sword? We must change the way view problems and populations. Our tangled healthcare web is not a Gordian’s knot to be sliced through. It is a tapestry, now tangled, that must be rewoven upon the loom.

What tools will knit our raveled sleeve of healthcare? Twitter, Facebook, e-patients, new apps, and old medicine are tools we use combined. We must activate doctors, playwrights, musicians and techies and splice them onto the same reel. That is how we heal the child. That is how we heal ourselves.

Only by working together can we create great change. By finding and embracing this concept of Justice, we can set a new horizon.

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."